Monday, 8 June 2015

Opening Up the Power of Us - CF Week 2015

London-based Tim
Wotton marked his milestone 40th birthday with the publication of his blog,
‘Postcards from Earth’, which in turn led to him writing his memoir: 'How Have
I Cheated Death? A Short and Merry Life with Cystic Fibrosis'. Now 44, Tim has
just won a Best Achievement book award. Here he explains the power of the CF
community opening up…

As cystic fibrosis is not well known or understood, cannot be easily seen
or ever properly imagined by most people, I tended to suppress my emotions
about CF and was very guarded about disclosing it to strangers. I never wanted
to be defined by my condition and I certainly never wanted anyone to feel sorry
for me or be pitied.

When I turned 39
with the big and almost mythical 4-0 looming, I had an epiphany that surviving
CF had been the biggest achievement in my life but it was hidden away and I
wasn’t talking about it or using it for my own or others’ benefit.

I decided to
write a diary of the year leading to my 40th to properly reflect my trials,
tribulations, happy times and what it has taken for me (physically and
mentally) to survive this chronic illness for so long.

I wanted to
increase awareness and understanding of CF and share my bigger picture of life
perspective, perseverance and optimism with a wider audience. One prime driver
was to inspire people that even at your lowest ebb with the odds stacked
against you, there is usually a way to overcome.

One additional
challenge and cruel twist is that CF can be a lonely and solitary condition as
us CFers cannot support each other physically as we’ve been advised not to mix
face-to-face. I felt the written word could help bridge this gap for the CF
community.

Actually reaching 40 in 2011 was such a dramatic,
life-affirming landmark for me that I felt I needed to share my experiences and
survival lessons. Still being alive with CF was not a fluke and I had many
useful strategies and anecdotes that needed to be offered to others.
Personally, I had an overriding desire to reduce the burden of carrying this
horrific condition on my shoulders by opening up more.

The reaction to my blog was
nothing short of spectacular with over 60,000 global hits. Family and friends
wowed me with how much they were enjoying my writing style and close friends
confided they didn’t know half of what I had to deal with on a daily basis to
still be alive.

The biggest reactions I received were from the adults with
CF, and the parents of young sufferers.
Indeed, the moment when I really knew I was making a difference was a
blog reply from a mum, which stated “Reading your blog gives me hope for a
future for my CF son, when sometimes there seems no hope at all.”

By opening up through my blog, I noticed the new
transparency about my CF struggle was being reciprocated by many people. This
felt empowering and I was motivated to take it to the next level. As I had
written a diary during the year leading to my 40th, I decided to
embellish that into a full-blown book.

As I am a full-time business consultant I had to
write the book in my spare time and would often use my underground journey on
the Northern line to edit chapters and my lunchtime and evenings to type up the
text.

I went through an
emotional process with writing this book as I dredged up my experiences and
associated feelings. I would always revert back to asking myself ‘What do I
always think, feel or say about this?’ Once I’d landed the right narrative I
instinctively knew and it always felt cathartic.

I had a deep desire
to write profoundly about CF with candour and lack of sensationalism or pity,
which is in keeping with the mind set of people with cystic fibrosis.

As I began to delve
deeper into my daily health challenges and uncover my personal demons it became
obvious to me that being authentic meant bringing out my inner feelings on
every facet of what I’d endured to try to leave a normal life. The health
battle I had always struggled to convey verbally to people felt easier to
expose in words.

Writing ‘The Hardest
Part’ chapter about the loss of my friends with CF was the toughest to write by a
distance. Many a tear was shed onto the paper as I tried to unearth the raw
emotion of how it felt to lose fellow sufferers who had every right to live as
long as me.

The final book is a
thought-provoking and amusing memoir, which elaborates on my extensive medical
regime, going to university, getting a job, the importance of alternative
therapy, faith and a positive mental attitude to counteract the multitude of
dark moments. It also highlights the significance of family support, my
marriage to Katie and the rollercoaster journey we undertook to start a family
which finally delivered our awesome son Felix.

I am already reaching
a global audience with this book. The CF community are deriving some hope and
survival strategies from my story while the wider audiences are definitely
understanding CF better and appreciating what it takes to combat it on a daily
basis.

In this brave new virtual CF world, where CF folk can’t openly
meet up and chew the fat, the power of the written word in the form of social
media, forums, blogs and books is filling a void and allowing us to open up in
ways unimaginable even 10 years ago.

Having a book
published and available for anyone in the world to read feels awesome, humbling
and bewildering in equal measures. Judging from the feedback received so far,
my memoir is making a real difference. To win an award at the UK’s People’s
Book Prize has given me the extra motivation to keep writing, being honest and to help others
with my life insights.

The book, which
features an introduction by actress and long-time Trust supporter Jenny
Agutter, is available to buy from online retailers Austin Macauley Publishers, and Amazon (ISBN 9781849637190).